Round two

We got 8-10" of wet snow (not the light powdery stuff!) by about noon on Thursday.  I tried to clear it with the snowblower, but I only managed a narrow path around the sidewalk.

Scott and our neighbor teamed up to clear the shared driveway and the rest of the sidewalks before dinner.

Then came the rain, thundersnow(!) and more wet snow!  3-6" apparently by 7am.  I'm hoping Emma's school is sticking to a two-hour delay instead of closing again.  To make up for Thursdays closing the kids have school Monday - which is a national holiday, even my office is closed!

No one wants to sacrifice any of their summer holidays.

Oh, and more snow due on Friday night!!

But in less than a week we'll be up to 57f. 

Toby couldn't wait for me to get the balloon down!

How deep!

For perspective 

Red alert winds and weather in the UK, Nor'easter storm hitting the North East US - it's going to be an interesting night all around!

Although we only lost power for 8 hours last week, when the freezing rain brought down trees and power lines, some of our friends were out until Saturday!  The heavy wet snow we are expecting tonight (6-10" on top of the still frozen snow from Sunday, and the weeks before) is likely to do the same to already weakened trees.

So, I'm thinking ahead a little!  Tonight, before the storm, I'll give the kids a bath, get all the laundry done.  I'll turn the freezer and fridge to the coldest settings (to increase their longevity in a power outage), prepare some food to be eaten cold, or that can be heated on the gas stove.  Interestingly, in a power outage, we can store food outside to stay fresh!  That is if we didn't have a fox prowling round, apparently got wind of Benjamin!

We're anticipating school will be closed again on Thursday, so I worked Tuesday so I would be off anyway on Thursday!  It's a shame because the snow days they've had are made up with days from spring break, so instead of 6 days, they'll have two before Easter weekend.  Any more, like tomorrow will mean they lose the equivalent time off their summer holidays!

This is the worst winter for snowfall on record I believe, and certainly the most snow I've ever seen!  It's very pretty, but everyone has had enough.

Roll on Spring!

Scott had the opening ceremony for the Olympic Games on TV tonight.  The kids weren't really interested, but Toby asked "what is Olympic Games?"

Scott replied "our country competes against all the other countries of the world.  Including Mommy's country."

What? Huh?  I was quick to remind him that the kids are British too!!

It was all very funny, but does highlight the almost impossibility of giving them a sense of British identity.  Not that it seems to matter here, where everyone claims a heritage other than American, regardless of if they lived there or not.

One day we'll be able to spend more time there, probably learn more about it than I know now!

Emma went back to school this morning, and we did our best to prepare her for what may happen.

I spoke to her on Facetime (like Skype on an iPhone), while she was out at lunch with Aunt Kim.  (Kimberly is having a girl date with Emma today to help her realize how loved she is and has friends!  So thankful to her for that.) 

She told me all about what they did at school and then said "D didn't say anything mean to me today!  She came up to me and said "Emma, Adam is absent!"  I was so surprised!!"

I'm backing down off high alert and going to assume it was a poor choice of words on her friends part, or simply a strange way to get attention.  It's tough to know when it's "nothing" or when a pattern is emerging.  However, it has always been, and will continue to be, a priority of ours to help the kids develop friends in different circles, like school, church, sports or just family friends, so that should the unthinkable happen with one friend or group, they have other friends to turn to.

It's not easy!  Time is always in short supply in our home.  With work, and our privilege in serving at the church, finding time to relax with our grown-up friends requires great planning.  I try to arrange playdates on my weekdays off, or when Scott is working, so we don't miss out on the times when we are all home. 

But we consciously chose that, as a family, we would value people and relationships, not the almighty $$ or upgrading our stuff.  It can make life challenging, when you are faced with direct choices, but we're learning as we go, and hope that our legacy will not be what we leave behind in our will, but who we loved well and impacted with our lives.

Happy to report our power came back on at 4:30pm, before we got home from work.

Still plenty of people in the state without power, including friends of ours.  Thankfully they have a wood burning fireplace for warmth if nothing else.

It can be scary to realize how dependent we are on electricity and technology.  I'm thinking we need to get ourselves a survival kit together.

On my toes

Last night I would normally have been going to my women's bible study, but I have been increasingly coming down with a virus attacking my throat and ears.  With talking and swallowing being very uncomfortable I decided to find someone else to lead this week.  So I was home to put Emma to bed and I'm very glad I was.

99% of the time, after the kids get dressed for bed and have brushed their teeth, Scott and I will each go and lay with one of the kids to settle them down for sleep.  That consists of praying with them and singing a song to/with them (currently "I have a maker"), but maybe includes a book or chat depending on the time.  More often than not, Scott will go with Toby and I Emma, and usually swap as they milk more one on one time before sleep.  If one of us is out the parent will do that with both kids in turn! 

Last night I sought to have Emma determine our prayer focus and asked if there was anything she wanted to thank God for today.  She said "not missing school!" which shows her love of school.  Then I asked if there is anything she wanted his help with, or that made her sad today.

She told me that in library, her "best friend" (let's call her "D") told her she hates her.  I gently questioned as to the scenario and context.  She said D was sitting next to another girl when she had leaned over while Emma was reading and whispered "I hate you" to her.  Emma claims she had not said anything before that and Emma ignored her after because she forgot what I told her to say in response to such comments (which was "I'm sad you feel that way. I don't hate you").  She wiped away a few tears and I could tell this was a deep wound.  She is such a friendly girl and rarely displays a cruel side (away from Toby!), so to hear that would be crushing.

This was not a total shock as Emma told me a couple weeks ago that D told her she didn't like her, or she wasn't her best friend or something.  Emma was really sad because she considered D to be her best friend at school.  They did ballet in the same class for two years before starting kindergarten, but didn't really connect because her mom and I didn't connect until I realized they were in kindergarten class together.

Anyway, I had contacted her mom to see if "D had said anything about them not being friends" and she said she asked and D said nothing was wrong.  So they came over for a playdate this past Friday and the girls were great.

I have tried really hard to help Emma connect with kids whose parents I trust and seem to hold the same values, but there is never a guarantee on what will happen between the girls! 

I have told Emma that not everyone will like you and that's ok, but it's not ok for them to say mean things, and that she should tell her teacher if anything like this happens again.  I emailed the teacher last night, but since school is closed again today I won't hear back from her.  I don't think I'm going to say anything to the mom, and Emma is going to stay away from D, which should not be too hard as they are at different tables and the time is very structured for the 2 1/2 hrs they are at school.

Emma did go on to ask "what if someone in first grade says it to me."  And this morning "what if someone else says it today?"  I do not want her to feel the kind of fear that comes with this.  The idea if one person doesn't like me I must not be good enough. 

I struggled my entire school career with "friends" that beat me down emotionally, to where I felt worthless and no one else would want to be my friend.  Sure enough as a teenager it seemed easier to build relationships with boys, they are a lot less catty, but of course they have a different agenda, and soon I figured that they would only stick around if I was passive and let them treat me like an after thought. 

I'm thankful I didn't go as far down that rabbit hole as many a woman has, and when I met Jesus he showed me that God loves me just as I am, just as he made me, he has no agenda other than to see me reach the potential he put inside me.  And to do that, I have to focus on his opinion of me, his sacrificial love for me, even when I showed him no love.

I still struggle deeply with feelings of unworthiness and rejection, but they are fleeting; when I take my eyes of God, and the incredible family he has blessed me with, and look around at all the demands others would place on me to fit their agenda for my life. 

It might seem quite a leap to go from one "I hate you" to a life lived in shame, but it only takes one step at a time to head down the wrong path.  We still may fail to guide Emma to a place of freedom and self-worth, but it will not be through the lack of trying, or praying!  I assured her last night that if someone is mean to you, it shows that they have a bit of "ugly" in their heart.  It does not mean that you are any less than we have lead you to believe you are, which is awesome, loved, beautiful, smart and kind. 

I am thankful for all the people that have built me up to where I can hold my head up and feel like my life has purpose.  I am thankful that I know they will do the same for Emma and Toby.

The kids love playing cards, and this is a really simple game - highest card wins.  

We discovered that despite Moebius, Emma's poker face is terrible!

Yes, she had an ace!!

Here's Toby trying so hard to play with the bunny!

You have rain?

Try freezing rain!!

Our house has no power, in fact most of our town is without power due to the ice bringing trees down on power lines.

School is closed again, probably due to the power.

Roll on Spring.  This has been the worst winter in years, even if it does look pretty.

Bunny Tales

I know you must love the cute posts about the bunny, so here are some tales...

He loves to chew on hair, especially Emma's hair when wet!

Even when I'm trying to braid it for bed!!

Emma and the bunny have a very functional relationship, she likes to carry him around like a teddy!  He's pretty cooperative with her.

Toby on the other hand prefers to pick him up by the ears to make him "dance".  We have yet to catch this happen, but there have been reported incidents and time-outs awarded!

 We followed the trend on the House Rabbit Society Facebook page and introduced him to snow!  He was not fussed either way.

He loves to walk along the back of the sofas like a cat!  However, we are trying to keep him off the sofas until we can afford to get him neutered (it's over $200 here because rabbits are not common pets and considered "exotic"!), because he likes to mark it as his territory!

Here he was laying at the bottom of the stairs waiting until I left the room so he could dart upstairs - seriously.  He is quite the rascal.  One evening he must've gone up there and visited Emma in bed as we found some deposits!

His latest trick is he jumped up on his cage, to get access to the basket I was keeping there (once for our blankets, he likes to eat it, so it was "away")...

Later on I didn't even hear him as he got into the basket!!

 

As he's getting bigger, we know we need a real hutch for him.  Ideally we would do that now, but the "de-sexing" seems more important, as then he can be out more and won't need such a big space.  That said, we have big plans for his hutch!  

Rabbits are kept inside here - too many predators outside, which is fine, so we are planning to modify a piece of furniture, like these...

Both relatively cheap cabinets from IKEA, modified for bunnies!  May as well have something stylish if it's going to be in the living room.  Yes, I changed my mind about the basement because, a) the kids hardly use it (!) and when they do it involves Scott dragging them around the floor at high speeds (ie. not safe for bunny)

and b) he is most active and really only wants to be out in the morning and evening.  He's pretty much my bunny, and I'm fine with that!  As the kids get older and don't chase and scare him he might be more interested in them.  For now though, he follows me around, jumps up onto my lap or licks my legs when I'm working out!

 

We need you prayers - Sean's (Scott's sisters husband) dad, Harry was in a huge gas explosion this evening.  He was working for the gas company in the basement when the house exploded.

At this point (10pm Thursday) we know he's in the hospital and has burns.  He's conscious and other people only have minor injuries.

Please join us in praying for his healing, the others who were hurt and the families that lost there homes in the subsequent fire.

And DO NOT touch the light switches if you suspect a gas leak.

It's Time to Redefine Failure

How funny that this devotional should be in my email right after I wrote my last post!!

It's Time to Redefine Failure
by Rick Warren

 “Fear of man will prove to be a snare, but whoever trusts in the LORD is kept safe.” Proverbs 29:25 (NIV)

Satan’s favorite tool to diminish your faith is the fear of failure. But you cannot serve God and be constantly worried about what other people think. You have to move forward. Proverbs 29:25 says, 

“Fear of man will prove to be a snare, but whoever trusts in the LORD is kept safe.” (NIV)

So how do you get rid of the fear of failure?

One way is to redefine failure. What is failure? Failure is not failing to reach your goal. Failure is not having a goal. Failure is not failing to hit your target. Failure is not having a target. Failure is not falling down. Failure is refusing to get back up. You’re never a failure until you quit. So if you’re attempting something for the glory of God, that’s a good thing. Failure is not trying and not accomplishing anything. Failure is failing to try.

Another way to get rid of the fear of failure is to never compare yourself to anybody else. You’re always going to find somebody who’s doing a better job, and you get discouraged. And, you’re always going to find somebody who’s not doing as good a job as you are, and you become full of pride. Both of them will mess up your life. Discouragement and pride will keep you from serving God’s purpose for your life.

The Bible says in Galatians 6:4, “Each of you must examine your own actions. Then you can be proud of your own accomplishments without comparing yourself to others.” (GW)

Did you notice that the Bible says there is a legitimate pride? There’s a good kind of pride and there’s a bad kind of pride. The bad kind of pride is comparing: “I'm better than so and so!” The good kind of pride is, “God, I'm proud of what you’re doing in my family, my business, my life, my walk of faith.” That’s the good kind of pride.

God hasn’t called me to be the best pastor in the world. God has called me to be the best pastor I can possibly be given the gifts, talents, and experiences he gave me. When you get to Heaven, God isn’t going to say, “Why weren’t you more like so and so?” He’s going to say, “Why weren’t you who I made you to be?”

Let go of your fear of failure, because anything you’re attempting for God in faith is a good thing, regardless of the results.

Moving fast

This week seems to be moving so fast!  Here's where I'm at...

I am on day 6 with no caffeine!  I know diet coke is toxic so I'm trying to give it up or at least dramatically reduce it.  Apparently it can also increase the sweet cravings, of which I already have too many, so cutting it may help there!

Surprisingly I have had less 3pm slumps than usual this week, which may also be due to being back on my exercise plan.  This is my second full week of Focus T25 and I have enlisted Scott to help me stick to it.  He has full permission to nag me and will also distract the kids while I do it.  He's so supportive he even ate all our ice cream so I wouldn't be tempted!!

Seriously though, exercise is the best form of anti-depressant and I was in a bit of a post-Christmas slump.  

Unfortunately being a Christian does not immediately eliminate the negative voice that most of us grow-up developing, at least not right away.  Mine became a little too loud over the winter so far, drowning out God's still small voice.

Earlier this week I hit an emotional wall as I struggled to accept the likelihood that I am going to fall short of expectations of me.  The feelings of failure and unworthiness crashing over me like a tidal wave.  

Thankfully I was already out of my nameless slump, (so thankful for some amazing preaching on Sunday mornings to speak truth in to my heart), so it was not long before I turned my eyes toward heaven for my help.

I very clearly felt God ask me why failing to meet those [perceived] expectations was so devastating to me, when my value, my worth and my purpose comes not from other people, but from God.

And there it was.  I have chosen to live my life by God's values and priorities.  I know that to be the good choice.  So I can not also meet all the expectations of people, be they family, friends or strangers.  You can not serve two masters.

Oh, the peace I felt at that point.  The freedom.  I have nothing to prove to anyone because God has already validated me.  

And so, I will do what I can, when I can, without compromising my values and beliefs - because to do so leads to a joyless, anxious, and ineffective life.

On Wednesday night Emma had a pajama party at school for the whole kindergarten at 6pm.  One parent had to accompany her.  She chose Scott, which I was pleased about, not least because in the past people assumed Pops was my husband because they see him with Emma!!

According to Scott they got the royal treatment, many of the moms remembering my Facebook post from Friday!  I'm not sure if it went too far, with moms ushering kids over to say hi to Emma, but I'm sure the teachers aren't so inclined!

I need to remember to tell her that having Moebius is not her purpose in life.  Her purpose is to love and serve God, and demonstrate his glory and strength by living with joy and peace despite Moebius.  If she chooses to become an advocate for others like her, that's her choice.

I wonder what else this week has in store?!

Home movies!

Toby designed a "fun" game for Benjamin!

Fun in the basement

http://instagram.com/p/jfVP7-O_vG/

Home-made "mountain"!!

http://instagram.com/p/jfEFDIO_mF/

Put a smile on!

Emma has her purple on!

I'm sorry to admit that I procrastinated too long and failed to get a purple shirt or scarf for today!  I will for sure next year.

I think this is the first year I've really been engaged in the awareness process, being a part of the Moebius communities on Facebook.

My school post has had an overwhelming response, with 70 "likes" (representing 70 kids in Emma's school) and about half commented with encouragement and their own special needs.

Moebius Syndrome is really rare, and while it may be hard to get real ground on awareness, the key is opening dialogue on how to handle disabilities in general.  

Often kids only need an answer to "why...?" And they are satisfied.  Adults over complicate the questions with how and when and what, to the point where it's intimidating to ask.

Granted their may be some people who look different but it's not a medical condition.  That's why teaching kids and adults to just be friendly, maybe even more than you would other people.  Let's face it, a kind word can transform the world of someone who is shunned and lonely.

America is very different than the UK in regards to greeting strangers.  But unkindness is universal.

Even if you are having a bad day, the person next to you may be having the worst day of their life. 

Awareness

Today is Moebius Syndrome Awareness Day!! Please join us and this wonderful community of families as we wear purple (anywhere!) and try to change how people see people.

This was my post on Facebook last night...

This is our daughter, Emma Hope.  She is the most enchanting, intuitive and inspiring little girl I've ever met.  She also was born with Moebius Syndrome. 

Moebius Syndrome is a very rare condition that has a range of symptoms. But maybe the most significant effect of Moebius Syndrome is that other kids often look at Emma like she is weird. When she approaches a kid or adult and says "hi!" but doesn't smile, they don't know how to respond. So they don't respond. Because of the lack of facial expression, happy or sad, people think she is slow, or does not have the same emotions. 

It can be hard to have a conversation with someone who you can't "read". She can not produce sympathetic expressions the way you would if your friend was sad. But she is so very smart, loving and sensitive!! 

Emma can not close her mouth completely to eat or when she talks. So her own name sounds like "Anna" when she says it. M, B, and P are not possible sounds! But she will patiently repeat herself until you get it. When she eats, you can see the food. She tries to use manners, but who wants to hold their hand in front of their mouth all the time. And try swallowing without closing your mouth! Really, try it now. 

Emma's tongue is also paralysed on one side and very small, so she can't lick her teeth or lips. She will face dental issues as she gets older. 

Emma's upper body is a little weaker than most. She can not open a new bottle of water, for instance. She can't swing on the monkey bars, and her balance is off so she can't jump high or run fast. But she can keep up a hula hoop like a pro!! This all might sound fairly minor, and we are thankful she does not have some of the other Moebius challenges like club feet or limb deformities. 

But if you really think about it, in this image conscious, visually stimulated, emotionally charged society that values function and health as though they are gods, well, just how difficult do you think this would be.  Friends and family are loving, supportive and encouraging.  But how about job interviews, first dates, high school, just trying to be accepted. 

And that is what Moebius Awareness Day (Fri Jan 24) is all about. We need more people to understand what Moebius Syndrome is, to learn how to relate to people who communicate more with their voices, body and action than a look. To not fear facial differences, to help us learn why they happen and so amazing people like Emma can believe that they are truly beautiful, valued and important. 

Before we encountered Moebius Syndrome, things like this made me so nervous. But now I know that it's better to try and make a connection with your foot in your mouth, than to avoid people because they look different than you. 

Please help us increase acceptance, understanding and friendliness toward people with Moebius and other facial differences. 

I posted it on my wall, tagged Scott so it was on his wall too! I also posted it on the school "Home and School" page, where many parents get the scoop on school events etc. The response was overwhelmingly positive and I am so hopeful that each year we can make a difference. Even if it is just in our community, it will surely help Emma as she gets older. She's now a celebrity!!

The things you learn!

One of the comments the school post on Facebook got:

Your daughter used to entertain my daughter in the speech waiting room at the [unit where she got PT] last year while my son was there for speech..She sang us songs, did ballet, told us jokes..such a warm, friendly little girl.  I have a son in first grade at the school and another entering next year.  If she ever wants a playdate, she is welcome  anytime..and my daughter would be thrilled too!

My little girl is awesome!!